Social Policy in Ontario

My dad and I were seated in camp chairs, perched precariously on a hillside overlooking the Fourth of July fireworks. My daughter Charlotte, with earphones firmly in place to protect her from the noise, cringed with each explosion. “How is Charlotte?” he asked, with a look of concern. “Are all of those therapies helping?”

It was the first time I read between the lines and understood what my father was asking.

“She’s always going to be autistic,” I said. “They aren’t going to cure her. But she’s doing well, and the therapies help her.” He didn’t look relieved. In fact, as my father watched my daughter watching her iPad screen, he looked like I’d just handed him — and her — a death sentence.

Charlotte received a diagnosis of autism when she was 5 years old. She’s 9 now, and I’ve had time to experience the full range of emotions about her diagnosis. She spent two years on waiting lists for therapies, and I’ve spent another two years working with her therapists to reduce her anxiety and help her feel empowered.

Improvement has come, but it doesn’t look like what I expected in the early days. I’m proud of the progress she’s made, but I see the stares when she flaps and screams in a restaurant, or runs away during a meltdown on the playground. What was perhaps excusable in a toddler or preschooler has become untenable in a fourth-grader. As she gets older, it is increasingly clear that she will never be “normal,” and people are less understanding of her differences.

As frustrated as I get when I see people judging her, I can relate. I haven’t always accepted Charlotte’s autism. When the diagnosis was made, I grieved the future I had imagined for her, and I raged at the unfairness of a childhood spent travelling from one round of therapy to another. I bounced from grief to anger and back again, and it took me years to find my way to acceptance. Even now, that acceptance isn’t perfect. There are moments, and sometimes even days, where it feels like too much: Too much screaming, too much intensity, too much being on my guard while I wait for the trigger that will spark another meltdown. In those moments, I find myself wishing things were easier. That I could exhale, just for a moment.

It’s easy to justify those moments. Families of autistic kids deal with incredible stress, and I struggle to protect my other kids from the challenges of living on a trip wire. It’s understandable that parents like me sometimes wish life were easier. But while it’s important for me to be honest about those moments, I have to resist the urge to dwell on them. Mourning the child I thought I’d have leaves no room for loving the child she is.

I know my father loves Charlotte. I know he wants the best for her. But his expectations haven’t kept pace with that love. He’s still populating her future with the goals that make sense to him, in his neuro-typical brain. Rather than looking at the world from her perspective, he’s still trying to fit her into his.